Anyone experience this and how do we get help??
My son and I started having symptoms a year and a half ago, started after a camping trip and we had a lump on different parts of the body , mine was above my right ear. It felt like something was under the skin, it itched , burned and a fluttering feeling. Then this lump felt like it erupted and started moving down the neck , very slowly felt like something was and still is ripping through the tissue, fever, rashes , allergic reactions , over and over as it moved down through the tissue to diff body parts. Now in the tissue around joints , and affecting muscles. I had a biopsy the first month and it showed a possible infestation, arthropod attack reaction. The first Dr. thought it was scabies so by the rashes and fever , his initial was a parasite. But back and forth to dermatologists with no knowledge but to throw me back gp with allergic reactions . So this now has caused allergies all of a sudden, chronic fatigue syndrome, mitochondrial disease, carpal tunnel syndrome bc of the lumps in the hand and all of the joints. so many more things to say but we are not being treated that one thing is causing all of these symptoms. My son and I were fine a year and a half ago and now we are sick, insomnia bc this is active as in it affects the nervous system and that started around the 3rd month. We need help on how to get medicine for parasitic infection and I have been doing research on some things. We are only being treated for the symptoms in which keep multiplying not the root cause. Any help or info at this point will be appreciated.
Hi
, you may be able to get some help through
https://rarediseases.org/give/?gad_source=1&gclid=Cj0KCQjw782_BhDjARIsABTv_JDBPVIwO-dYzNOL7aGeR257bidHdGPoYJEWfRCRO3Hn08gOM4r1j04aAqM4EALw_wcB or Vhttps://www.orpha.net/
I hope there is something helpful there. - Warmly, Donna (Team Member)
Hi,
!
I'm just going to be up front and state that I am certain you know your condition better than I ever could. So, apologies in advance if my questions are not helpful and if you have already been asked these things.
Since you susect your initial infection was caused by an insect, have doctors ruled out other insect borne illnesses like West Nile Virus, Rocky Mountain Spotted Fever, Anaplasmosis and the like? I assume since you and your son are receiving treatment, I assume doctors would have ruled out these conditions, but you never know. And, again, I bet you are well aware of this, but there are a number of illnesses that can be caused by mosquitos, ticks, and other insects. So, if at all possible, you may have to look into seeing specialists in the infectious diseases field. Seeing specialists can be expensive, but it may be the best route at this point. I am so sorry you and your son are in this position and I do hope you get firm, accurate diagnoses AND successful treatment options!
Best, Erin, Team Member.Thank you and yes we have been tested a few times for this, and it has always been negative. I am 47 , and my son is 22, and we have never taken any medications or anything like that to be allergic and we moved out of the home we were in , in fear it was something in the house. Been tested for heavy metals, you name it, and my diagnosis were so bad as in they just kept guessing things like fibromyalgia etc.. I don't think 2 people can catch MS or fibromyalgia at the same time, so in our frustration it has just made more questions than answers at each appointment. It feels like a parasite, I have said it from the beginning, I left out a lot of symptoms, along with the above mentioned we had low body temps at the 3rd month mark along with black flakes coming out of our skin, in which I took in baggies to dermatology and they just give me a blank look, never tested it, painful lumps under the skin everywhere, and vibrations throughout the body like you are sitting on a high voltage electric box. We had zig zag patterns where we felt something ripping through the tissue , this is so bazaar as drs claim, that we are just being bounced back and forth , and our health is just declining. My son and I were very active, worked out ,played sports, and now struggle to sleep 4 hours a night or day I should say , it has completely altered our sleeping pattern, and now I struggle to walk to the mailbox without being exhausted , and that is not normal on any scale. We have been humiliated by some drs., and I don't want to say what I want but where do you go if drs are failing you and your son.
Have you considered Lymes Disease?
